Mainly venting, but any commentary most welcome

I've been on prednisone for going on 11 months. I want off this stuff! I cannot afford to gain any more weight, flames are shooting out of my stomach 24/7, and I'm worried about my eye health (recently diagnosed glaucoma). Today's count was 38, last time was 22 - both counts on the same 20 mg dose. Every time I try to taper, even by only 2.5 a day, count dips into the teens or lower.

• Dr. Hema also wants me off pred and a treatment change. He did a run-down of the ones he uses. He wants Rituxan, but only because I've refused splenectomy (his #1 after pred choice). He doesn't appear to know the research that shows splenectomized patients have a significant risk of blood clots afterward, not to mention increased cardiovascular risks, etc. He only pointed out the infection risk. When I asked about clotting risk, he said it's not associated.
  
  
• I asked about the Rituxan success rate; he said 50-60%. Not good enough for me, given the potential side effects. He says none of his patients have had any.


• He has a few patients on N-Plate, but not enough of them for long enough to have encountered complications. Also not enough that he could assess the success rate.


• I asked about Promacta and was shocked to hear... he never heard of it.
  (Is this available in the US, or am I mistaken about that?)


I brokered a compromise of sorts. I will alternate between 15/20 mg pred daily and get a weekly count to see what happens. I didn't tell him that even if the count drops, I'll still want to continue the taper.

I guess I need to find a more ITP-savvy MD ... right? I found the name of a "clotting disorders" specialist at a local university hospital who should be knowledgeable.
The problem is... He will still offer the imperfect treatments I already know about and don't want to do. All I really want is confirmation that I'm not insane to just go without any treatment and take my chances, but I doubt there's an MD on earth who'll give me that.

Janet - ultimately, it's your choice. Have you tried watch and wait before? What happens when your counts are low?

The TPO's are very viable options, however, I think I'd want a more experienced Hemo for that!

Hi Janet,

I'm on Nplate now for >2 years and have no side effects.
Sometimes I need to add some predni to stay on the save side.

Good luck!
Joerg

I am sure there are university doctors who will endorse your choice live without treatment as long as bleeding symptoms are minimal. Remind us where you live?

I will tell you from experience that getting a 2nd opinion from a specialist changed my life with itp! If you don't want to seek a new doc maybe bring him all the research about whichever treatment you want to try and see if he responds. My original doc didn't, but I'm assuming there are docs who are open to research and learning new things.

I'm so sorry you have been on pred for that long. I was on it for 3 months. That was long enough!

Sandi, I consider the bleeding I've had to be minor. For example... I've never had a nosebleed that wouldn't stop with a few minutes pressure. There have been days when the oozing recurs several times a day, but for no more than two days is a row. I've had one large, painful mouth blister in 5 years, but otherwise there are just a few tiny black spots that are not raised. Bruises can be deep purple/black, but they generally appear just one at a time. I've had these signs with counts as high as 70 and as low as 4, so it's hard for me to tell by signs alone where my count is. Most of the time, I have none of these signs, just a few scattered petechiae, if anything.
All these signs are considered minor, right? Worthy of just watchful waiting?

Tamar, I'm in St. Louis, MO. The MD I'm considering is based at Washington U. He is the only one in their hematology department who lists all manner of bleeding disorders as his primary interest. Everyone else is either a pediatric specialist or oncologist.

Joerg, thank you for sharing your NPlate success story. I'll certainly keep it in mind for the future. And I hope you'll continue having good results from it - without needing too much help from prednisone!

V-, your 'second opinion' experience has motivated me more than you could know. You've helped me convince myself that I do need a specialist's input about how to proceed from here. I should not assume he will automatically push the same agenda as my current MD. Assumption is one of my biggest faults.

I appreciate all of you for helping me talk this through. Putting my concerns down in print and reading about your personal experiences have helped me organize my thoughts and better know what I want to do.

Janet, I stopped on my first successful search for a hematologist in St. Louis with an interest specifically in ITP: oncology.wustl.edu/people/faculty/Blinder/Blinder_Bio.html

It's listed under research interests, not clinical interests.

Maybe this is the doc you're considering seeing...if so, it looks like he'd be a good choice, if not, maybe it's worth considering him.

Yes! He's the one I'm talking about.
You're so kind to take time to look this up and confirm what I was thinking.

I am a huge fan of doctors who teach, and doctors who do research, as they are much more likely to attend ASH and know what's available, what's coming, and also the benefits/drawbacks of the watch and wait approach you're considering.

I attended ASH once (not as a registered attendee, I just crashed the ITP sessions, which were VERY cool), and it is huge....20,000 attendees, with a dozen things going on at once at all times. Having a researcher who will seek out the ITP sessions and bring that knowledge back to their practice is a big plus.

It's not a fail-safe. I've had 3 doctors at the University of MN:

The first was a savior for me....treated me like an equal and talked through options, took my emails and answered my questions (often within minutes) and he even emailed me the first research article published on WinRho hot off the press when he wanted to discuss it with me on an upcoming visit. He moved to take a prestigious position at UNC, and suggested I transfer to the doctor that was his mentor when he arrived an the UofM.

This second guy and I did not click. When I wanted to try progressively lower doses of WinRho to see if they would work (after 4 years on a constant dose), he refused to discuss it--until I got my previous dr involved by email, whose response was "what would be the harm in trying that? It would be interesting to see the results." I finally ended up firing the second doc over a treatment argument.

I moved to a 3rd hema at the U, and she and I are on great terms. I brought her the (admittedly thin) low dose rituximab research back in late 2007 and discussed trying it because it was also being researched with some success for MS (another condition I have). She was absolutely game to try it, and even to modify the 4 x 100 doses to 2 x 200 doses 3 weeks apart when we talked about the fact that the results were likely to be similar. She will prescribe it for me again whether I want it for ITP or for MS (my neurologist could not prescribe it for MS, it's too far removed from a recognized treatment). The key here is IT IS MY CALL. She's fine with me not treating (I'm often in the 30s and 40s these days) and I make appointments at least once a year, and more often if we have something to discuss. She also takes and responds to my emails.

So, I'm 2 for 3 with university hematologists, after having a first hema who was discussing taking my spleen out when my count was 125K on 60 mgs pred (obviously not a sustainable dose of pred, but he didn't know anything about rituxan or WinRho or other things in the pipeline).

The air of confidence you project is an inspiration, Tamar.
I don't have enough of that yet to deal more assertively with my current MD. He has a comeback for almost everything I've proposed... Like low-dose Rituxan, the real complications of splenectomy, the need to treat at all, etc. Once he shoots my ideas down, I don't have the nerve to keep nudging or to raise the issue a second time.

You've given me hope that they're not all like that. I've got nothing to lose by running my case by Dr. Blinder and have definitely made up my mind to do it.

Janet,

I was incredibly lucky in that my sister-in-law was in her residency (for a different specialty) at the U of M when I started dealing with ITP. I had no clue how to choose a second opinion doctor (treatment options were few in 2001, but I knew that I wanted a second opinion before ANY surgery).

My SIL offered to make some inquiries, and though I expected her to come back with a recommendation of someone who'd gotten their training at the U, instead she came back with the name of a professor who I could see at the Masonic Cancer Clinic on campus. I didn't even know that doctors who taught also saw patients. Discussion forums were pretty new back then, and I was wary of taking advice from other patients anyway, so wasn't about to join a discussion group about ITP...I thought that would just confuse things.

Times have changed, as have I. I am a big fan of discussion forums now, on a variety of topics, and I don't know what I'd do without them. You have to take a lot of what you find on the web with a grain of salt, but it's a great way to learn about options to explore.

I hope that Dr. B is a keeper! Let us know.

Oh my gosh, Janet! No, they are not all like that.

I've had the same Hemo the entire time (16 years) and he is always open to my suggestions. I still see him once a year. He did the directing at the beginning since I was then clueless, but once I learned about the options and realized that I had a choice, I spoke up and he listened.

I did get a second opinion a year into the diagnosis because I'd been on Prednisone twice (and tried Win-Rho and Danazol). I hated Prednisone and thought my Hemo must not be aware of some simple ITP miracle cure out there, so I saw a specialist in Pittsburgh. Took all day with traffic, waiting, blood work (over 20 tubes), only for her to recommend "continue with Prednisone as needed". Waste of time.

Anyway, I found out that my Hemo was open to suggestions about treatments and dosages, so I got to call the shots and have been happy with him ever since.

Good luck to you - I hope things go better for you!

I am on my second doctor only because my first stopped treating hematology patients! We really need to be comfortable with our doctors. That way we can do like Tamar has done bring in information.

I was given the option to use another hospital and doctors for my ITP but that involved driving 1 1/2 hours away from home. I chose to stick with the doctor 35-40 minutes away. I am still not impressed with my new doctor but I'm learning to live with him. (my choice he's nice piece of eye candy!)

hi midwest- I also encourage you to find your dream doctor! :lol:

My first hemo was intimidating, domineering and also shot down anything I suggested. I was having so much anxiety when I went to see him, my blood pressure was through the roof. He wanted me to do Rituxin as a next step after prednisone. NO WAy was I going along with anything like that! too risky! But I had so much resistance of this doctor that anything he suggested would have sounded bad.

I found another hemo who was super-nice, great listener and very smart. I looked forward to seeing him, plus I loved his nurse practitioner. When he talked to me about Rituxin it was all very different. I listened with a more open mind and trusted what he said. He said there is a slight chance of side effects with Rituxin but with prednisone it is a guarantee- if I stay on pred for a year I am guaranteed to have bad side effects possibly permanent.

Also fortunately, there hasn't been anyone on the forum recently who has had a brain bleed. But at that time, there were a couple people who had. Reading their stories was a reality check. I didn't want to risk a stroke just to avoid treatment.

Anyway the Rituxin was quite uneventful. No side effects. During the year after I was healthy, no illness. lucky, but it also didn't raise my counts much. It brought them up to about 20K for 6mos, enough that I could taper off of prednisone. all in all, worth it.

I'm on Nplate now and like it- not having any side effects. Of all the treatments I've done, Rituxin, Promacta, Nplate- prednisone had the worst side effects and did the most damage- I started with strong bones, now have the beginnings of osteoporosis.

sounds like a great idea to check out the new doctor- good luck!

See? This is why I come here when I'm feeling panicky.
You folks are a collective voice of calm and reason. I've taken your sage advice to heart. Will update later.

Update

I have my appointment set for Sept. 11 with Dr. B.

Count yesterday dropped from 40 to 27 at the same pred dose. Next count in a week.

I saw my thyroid doc yesterday for a script renewal. He's also pushing splenectomy as my next best option. We got into a bit of a verbal scuffle about it. I let it drop after he started sounding annoyed. Clearly, these two people don't keep up with newest findings ... Not that I would expect an internist to, but still...

Hang in there! I'm glad to hear you are going to see Dr. B.

Midwest,

Hang in there! I know I have probably told you but getting a 2nd opinion with an itp expert changed my life! I can't believe the endocrinologist was getting annoyed with you. How rude. May I ask what type of thyroid issues you have? I have Graves' disease and my sister had thyroid cancer. I'm just curious.

Seems like thyroid disease frequently goes hand in hand with ITP, right? I'm hypothyroid due to Hashimoto's. This doc wasn't an endo but an internist. It was just the second time I've seen him. In fairness, we're just beginning to learn about each other, so I try not to judge. Maybe I shouldn't even have brought up the ITP subject in any depth.

It really annoys me, though, for an MD to assume I can't possibly know much and that they have the same answers for every patient they see. If they want to employ the law of averages to the risks of the disease, why don't they do the same with the risks of the treatments?

You have a very valid point. I wish I could answer that question. I am assuming this doc didn't really know much about itp. I just wish he would have said you know I don't have all of the answers but I am willing to do some research.

I had this weird mosquito bite that had a ring around it which was actually a bruise. However it looked like a Lyme disease because of the ring. Well instead of just blowing me off saying nothing is wrong, the doctor brought into the room his computer and books and we looked up info.togeher. I was amazed. He treated me as a human being. He was humble enough to say I don't have all the answers. So the moral is there are some really patient friendly docs out there. You just have to be patient and try them out.

It does seem to be a theme thyroid disorders and itp. Boo

It was as if he was spouting off what he learned about the 'best' treatment for ITP he learned in med school 30 years ago. Why not just be honest and admit to not keeping up with current practice and letting it go at that?

The finest doctor I ever met was my babies' pediatrician. If you asked a question he didn't know the answer to, he'd simply say, "I don't know, but I'll find out for you." instead of faking a baloney answer. I had such respect for him because of that. I've never met another MD like him since, and my "baby" is now 39!

It sounds like Dr. B will really be up on itp research. I have a feeling it will be a positive experience. I know that many of the Itp specialists attend conferences together and know each other since there aren't too many of them .

Updating...

I saw Dr. B. Although he was clearly more knowledgeable and ITP-experienced than my current hemo, there wasn't much difference between them. He is also pro-splenectomy as my next best option. Counting the student MD who took my history before Dr. B came in, I now have five MDs ready to chop up my spleen. They act as if none of the other options is good enough. And of course, none of the five will allow me my own opinion that the treatments are potentially more damaging than the disease itself or that I can forgo all of them and accept the brain bleed risk by itself.

Some bits of new information I gleaned from him (his opinions based on research and his own experience) are:
Rituxan has not proved to have serious infusion reaction or toxicity in his cohort of ITP patients. Side effects are much more frequent as part of cancer treatement. It works to raise platelets about 50% of the time, and for those in whom it works, it produces a durable response about 50% of the time. Not great odds, IMO, for a drug that insurers require that the first dose be given in a hospital. That speaks volumes about what heavy duty stuff it is. Still... I may consider going ahead with it before a TPO-RA.
As for the low-dose option... It does have reduced toxicity, but it hasn't proven to produce as durable a response nearly as often as the full-dose regimen. For that reason, he wouldn't recommend it.

He has many patients on N-Plate. It works about 80% of the time, but it's for life. I didn't bring up the newer information I see that some people achieve remission and are eventually able to get off it. Neither did he bring it up.
In his experience and research, Promacta seems to cause more frequent clotting events than N-Plate.
I asked/he answered that here in the US, Medicare reimburses treatment with N-Plate (as an injectable) but not Promacta (as an oral drug). Something for me to think about since I'll be on Medicare next May.

He ordered blood tests, 6 vials worth. Tested for h. Pylori and anti-phospholipid ABs, which current doctor hasn't done to date. If I'm APA positive, I'll need to come back here to find out what it means, as I have only a rudimentary understanding of how they relate.

Before parting, he mentioned I should visit the PDSA site as a source of good, balanced information. Hah. He doesn't know how often I'm here and at PubMed and MedScape!

So... That's it. I'm still unable to make a decision. The prednisone is slowly poisoning me, so I have to make one soon. If I were a very, very brave woman, I would taper off the pred and let fate take the helm. The root of my entire inability to choose a treatment and go ahead with it is that, as odd as it must sound to most people, I don't fear a fatal brain bleed. It's a disabling brain bleed that I fear most.

Will be seeing my regular hemo this Wednesday to talk it all over. Have no expectation at all that anything will get settled.

No mention of the immunosuppressants. My haematologist would try myceophenolate before the TPOs.

My name is Carly...sorry to hear about the decisions your doctors are making that you dont want to hear...here is a little of my background....I was diagnosed over 5 years ago...been hospitalized 20× for blood transfusions platelet transfusions and ivig...I was so tired of laying up in a hospital bed feeling horrible for having blood transfusions because I felt I was just wasting that blood because my platelets would go up then a week later be right back down....I tried rituxan had 4 treatments but didnt seem to help...tried N-Plate for about a year it worked on me then slowly started getting ammune to it....my next was promacta took for about another 6 months but that kept me around 40. After 3 years I decided to get a spleenectomy was told its only a 50/50 chance it would work but was wanting to get off my 80mg of prednisone....I was like you didnt want to remove body parts if I could find better options...well had the spleenectomy and for about a week my platelets stayed normal fast forward to today and my normal is about 75 nothing has worked for me I live my life today taking 20mg of prednisone(which I do hate) but I have a 12 year old I have to live for..keep your head up... its a hard road but you have to live for today...I feel you on all the treatments but you wont know what will help you if you dont try/fight! I also have been diagnosed with hoshimotos...my doctor said its normal when you have an auto immune disease that your thyroid start acting up till you get a treatment that works! Again sorry to hear about your frustration I have been there!

Janet, when you wrote, "As for the low-dose [Rituxan] option... It does have reduced toxicity, but it hasn't proven to produce as durable a response nearly as often as the full-dose regimen." - were those your words or the doctors?

And by "hasn't been proven..." - does that mean that the low-dose is less durable or that there is just not enough evidence to prove durability?

From my reading, the low-dose option gives results that compare favorably with standard-dose treatment, based on studies that encompass roughly 200 ITP patients. If you are reluctant to try Rituxan because of the toxicity, the low-dose option might be a good option for you... if you can find a hematologist who is willing.

Your regular hematologist's earlier comment, that side effects are not dose-dependant, is only partly true. Some side effects seem to be dose-dependent and some do not. Some studies of low-dose Rituxan report lower rates of side effects overall.

Rob,
Those words are mine. I'm sorry I can't remember his exact words. I can't say for sure whether he said, "We've found" or "studies have found" or "they've found". I only got the basic gist of it... That the low-dose option isn't proving to be all it was hoped. Whether it's in this MD's experience only or in general usage ... I can't say. It did cause me to decide that if I ever go that way, it'll probably be full-dose, because if I'm going to take the risk, I'd rather have the best and most durable result in the first attempt.

How is Ellen doing now? Has she gotten a response or any side effects? I have my fingers crossed for her.

I think I've come to a decision about my situation, with the help of my husband. I think I bore him to death sometimes with my waffling and angst about this. But I had a long heart to heart with him last night. I laid out what I know about the drugs... Rituxan, 50:50 chance of effectiveness - 50:50 chance of durability VS. NPlate, 80% chance of effectiveness, long-term risk yet unknown, probably for life. He said if it were him taking his chances, he'd go for the surer chance of success, even if it had to be forever.
I have to do something, I guess. Might as well bite the bullet and pick my poison. The pred doesn't seem to be doing its job anymore. Time for a change.

One thing is for sure: if I had to pick my poison it would NOT be prednisone! At least not long term. Not just because of the unpleasantness, but because of the potential for permanent damage.

It sounds like your decision is well thought out - certainly well informed - and so it is the right one for you.

Ellen is doing fine. She had a moderate reaction - chills, etc. - to her first dose, then the others were easy. We are patiently watching for a rise in platelets, which can take some time, especially with the low-dose option. Oddly, the time-to-respond varied widely between researchers of low-dose; but quicker responses seemed to correlate with better lasting responses, so we are hoping to see some improvement soon.

Saw my regular hemaT today. My count at Dr. B last week was 43. Regular MD wasn't going to recount today until I told him I have bleeding signs I didn't have the other day. Today it was 6. I have to up my prednisone to 30 mg... Higher than I've taken yet.

I finally decided on NPlate and let Dr. Regular know today. He was feeling me out about what made me decide. I said, "Well, at least it doesn't have a black box warning [like Rituxan], and that's appealing". He shocked me that he's backed off his splenectomy recommendation. He didn't realize I'm as old as I am. What the??? It's right on top of my chart, Doc!

I do believe I educated him a bit, although he didn't admit it. A couple of visits ago, he told me he hadn't heard of Promacta. He must have done his homework since then. Today when I mentioned my preference for NPlate over Promacta due to the latter's higher number of clotting events, he said he had discovered that in his "reading" too.

Thanks everyone, for being there and listening.

Janet,

I'm glad you have made a decision. I'm glad that you are now well informed and can advocate for yourself and it sounds like your doctor cares about you enough to do his homework! We are always here to listen and vent to! I will say be patient with the Nplate. It took me awhile to respond and on a high dose, but it did work for me. Make sure your doc understands the guidelines from Amgen. You can get them online as well to be informed. Pretty patient friendly.